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New diagnosis

Posted , 8 users are following.

debbie87686
debbie87686

We've just spotted our 13yr old daughter has a odd shaped spine (wasn't obvious 2mths ago!). GP is referring her to an orthopedic Cons but has given us the 1st diagnosis of Scoliosis. The curve to us seems more severe than mild but isn't causing pain. She's an athletic 'young' 13yr old and hasn't gone thru puberty yet. We're keen to get the ball rolling immediately but as it is the NHS there's a waiting list. Should we look at going privately? Any advice would be most welcome. Anyone else been in a similar situation

0 likes, 9 replies

9 Replies

  • Jay91157
    Jay91157 debbie87686

    Posted

    Hi Debbie, This is the age most people are diagnosed. As it was not there two months ago this is suggesting it is mild. A severe curve is 40 degrees and above of which in the UK is considered operable.  You could go private to get an idea of how the curve is presenting, while you wait for an NHS appointment.I was diagnosed at the same age and then fell off the NHS radar so to speak at the age of 16 as it seemed to not be progressing, but over the years it did and I had my op  last Feb. 71 degree top 48 degree bottom as the curve becomes s shaped. Do not make rash decisions as the op is not to be taken lightlty should you have to go  down this route. Some peoples curve do not progress and live with it. Some have pain others do not again depending on the curve. Was a difference in leg length menioned and has her hip on one side bent more to a C shape than the other. All these are signs you could be looking for to give you an indication of how progressive it is. I would be inclined to try the private route so you have at least the knowledge of an expert, that you could use when and if  you do use the NHS.  Good Luck. 
  • betty14688
    betty14688 debbie87686

    Posted

    hi Debbie,

    I was diagnosed at 13 years old,or maybe it was 12.In school, they used to make you bend down and touch your toes, and they would check for a hump.They never found mine.I was sitting at the kitchen table, and my step sister asked me what i was hiding under my shirt,and I said "nothing"-Then she pulled my shirt up and yelled for our parents.I had a 56 degree curve,and had no pain-I was  a gymnast.My concern is, if you see this with out these weird tests they give people in school, it seems pretty progressive.Puberty is a spurt of growth,so there is a high probability that once puberty hits, it will get worse.

    I am the U.S.A.,I assume you are not.when you talk of going to a private doctor, I'm not sure of your economic situation,and if you do have the financial means to pursue that avenue, do it right, and come to the U.S.

    As I offer all who are not from here,if you need a place to stay rent free while your child undergoes treatment, I always offer my home.It's a shack, but I'm a great cook!This country has its issues,but medical treatment is supreme here.

    Now, if your child does have a serious problem,a progres and has to have surgery,it will be difficult for her to understand that for a time after surgery, sports are off the table.That was very traumatic for me.But, with your support, she will be O.K.-She may have to find a new passion, a new direction, and the great thing is life offers so many opportunities to be happy and succeed.

    Best of wishes!

  • Hepclan
    Hepclan debbie87686

    Posted

    Hello

    Our 14 year old fighter was diagnosed 6 months ago and is now warns a Boston brace 22 hours/day. We paid to speed up the process rather than wait 3 months for an appointment on the NHS . Her next xray is scheduled for early April so we hope that at the very least there is no deterioration. She has a s shape spine but so far no pain thankfully. We also paid for treatment at a private physiotherapy clinic in London and she does exercises every day to strengthen her spine.

    This is a long journey. Good luck

    • catherine_39957
      catherine_39957 Hepclan

      Posted

      hello,

      we're in Canada and 14 yr old son in Milwauke brace for Scheuremann's. Same S shape but worse at top 68 degrees. Progressive for sure 2 xrays in 6 months showed worsening. They don't consider surgery here till min. 75 degrees. 

      We've had the brace for nearly a month now and so far so good. In fact I swear the boy is a full inch taller already! We go in a week for a 1 month in brace xray to confirm what so far seems good.

      Was really hard adjusting first couple weeks but he's doing his time, he doesn't do excercises like he should however.

      Here's hoping this not only works but lasts for them!!

      Our thoughts and best wishes to you and your daughter.

  • Kelly271
    Kelly271 debbie87686

    Posted

    Hi Debbie,

    I'm 19 and currently awaiting spinal fusion surgery for my S shaped curve. I live in the UK also.

    I was put on the NHS waiting list last April via Musgrave Park Hospital in Belfast. Just a few weeks ago I received a phone call from Musgrave who advised me they're flying patients on the waiting list for surgery to the Royal National Orthopaedic Hospital in Stanmore, London because we simply don't have the machinery or surgeons to carry out the operation.

    I met with the surgeon from Stanmore and the choice is now mine. I have been given the opportunity to decide when I want to go for surgery rather than waiting years on the NHS.

    By the way, the NHS are funding this scheme and fly 2 family members over for free to stay with the patient. They're also accommodating family members in a nearby hotel.

    I hope this helps.

    Kelly x

  • JENNY1968
    JENNY1968 debbie87686

    Posted

    If in Northern Ireland the current first referral waiting time for ourorthopaedic is 87 weeks (supposedly) I'm waiting now 17 months with no end in sight. I've had to go privately.
    • Kelly271
      Kelly271 JENNY1968

      Posted

      Hi Jenny,

      That's crazy. Were you with Musgrave also? If you don't mind me asking, are you waiting for surgery too?

      Kelly x

  • JENNY1968
    JENNY1968 debbie87686

    Posted

    No I'm just waiting to see a consultant.
    • Kelly271
      Kelly271 JENNY1968

      Posted

      That's crazy Jenny. The waiting list now must be massive. But you know what they're like, sometimes we're the ones that have to do the pushing so we can get appointments!! I think you made the right decision going private, I would too if I was waiting that long. I first got seen April 2015 and seen the consultant a few weeks ago, so I suppose that's rather long, too. But I hope all goes well for you. All the best.

      Kelly x

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